HNPP and Me

you don't understand. in camelot, ‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎ ‎‎ ‎‎‎ ‎↳ ‎ ‎she'd only see me through their eyes. ‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎‎ ‎not a knight. not a man. not anything.

You can't have wrinkles, you can't have grey hair, you need to look 24, you need to fit in the prom dress you bought when you were 16. And the way this extends into healthism and ableism is detrimental to the collective conscious, I think. People act like you're a "bad person" if you get covid. They act like if you get sick, it's because you did something wrong. They say you should get into health and fitness not to make yourself happy or to have something to do, but to "prepare our bodies to age gracefully."

As someone who was chronically ill and disabled since childhood, I've always had a bit of a disconnect with this culture?? Like, having to LIVE with a facial difference for 15 years before "cosmetic reparation" was an option for me taught me that the way you look and how healthy you are really has nothing to do with you at all. But the main reason people aren't "unlearning" these issues is that americans refuse to accept that they coexist with disease at all.

Cancer treatment only happens in movies or to people you don't talk to anymore. Covid isn't real. Covid is over. Everyone with lung cancer got it because they smoked and they knew the risks. If you're on a chemo drug, you must have cancer. If you have cancer or a spinal condition, you MUST be dying. If you're in a wheelchair, you can walk if you really wanted to. Don't be visibly sick or disabled around me; it makes me uncomfortable. Don't talk about your health; it reminds me of my own mortality. Deny, dissociate, don't think about it.

When the reality is that new illnesses and outbreaks happen all the time. "Chemo" drug units and dialysis centers actually encompass a range of drugs and disease treatments. Some people have to get a year's supply of iron infused into their blood once a year. Does that scare you? If you've had cancer, you have cancer forever. You're in REMISSION because the root cause of the problem is still in your body. You're cancer free now, but maintenance diagnostics will be a permanent part of your life.

But we can't talk about that. Because the concept of BEING ill is so deeply dysphoric for the generally healthy, abled public. Getting sick is TRAUMATIZING to the point where if you can fully recover, you tend to not dig deep into your feelings about the situation ever again. And you're doing it to yourself, but it's also kind of being done to you by everyone. Honestly, just normalizing illness and coping with our close proximity to it would do wonders for society.

It's winter where I'm living and we have really bad snow. And the snow plow people are really bad at their jobs probably because there aren't snow plow people who clean sidewalks. As a solution I got to thinking about how I could increase the traction on my wheels. And the most redneck thing I could think of was taking a bunch of zip ties and tying them around my wheels. They last surprisingly long, and work surprisingly well. It's basically the same premise as chains for your tires during the winter.

also it helps me walk or whatever

How my wheelchair actually makes me feel:

how you think it’d feel:

how it actually feels:

How I thought forearm crutches would make me feel:

How forearm crutches actually make me feel:

ID3: An old man on a mobility scooter vs a person in racing gear and a helmet whizzing by on a four wheeler.

They have to take a pill every day to treat a chronic illness or chronic pain? Okay, what happens when they forget, or are in a bad situation and run out of pills?

They lost a limb or are paralyzed and now they have a sci-fi cybernetic prosthesis/exoskeleton to replace the lost functionality? Cool. What does maintenance look like? Does it ever malfunction? What happens if they don’t or can’t take care of it? Do they still get phantom pains even with the adaptation?

They’re deaf or blind or anosmic, but they’re a wizard who uses magic to adapt to the lost sense? Fine. What does it take to maintain that magic? Do they have adaptive strategies for when the magic fails?

They’re autistic or have ADHD or schizophrenia or some other cognitive disorder, and they have a chip in their head to make it easier to communicate when non-verbal? Okay. What exactly does it do for them? Does it ever malfunction or give them headaches? What are other ways they’ve adapted to their disability apart from this chip?

Other questions to ask that go for all kinds of things:

Do they have a service animal? For what tasks or situations is it trained?

Do their family/friends know how to help if their adaptive technologies/strategies fail?

Is their disability (or the adaptation) visible or observable to others? How do others react?

Has their society adapted to accommodate disabilities, and if so, in what ways? (Ramps, closed captions, sign language, etc.)

Are people scared that using a white cane will make their blind character seem weak? They can’t use a cane because they’re so special that they already know what’s around them, and other blind people who use guides are inferior because they’re not special?

I’m tired. Give your blind characters white canes and other guides. Let them hold onto their friends, let them have guide dogs. Don’t make white cane users feel ostracized for not being “strong enough” to go without.

Another thing that pisses me off is when a sighted character comes up with the fantasy equivalent of braille and teaches it to the blind character. Braille was invented by Louis Braille, a blind man, in 1824. The blind character should be the one coming up with it.

Tldr I’m blind and tired of sighted people lol

…and y'all, I almost cried. Just look at these. LOOK AT THEM.

So many skin tones!

PLUS SIZED BODY TYPES!

NATURAL HAIR STYLES!!! MULTIPLE SHADES OF DARK SKIN!!!

LOOK AT THIS PROFESSIONAL LADY!

SO MANY SKIN TONES AND BODY TYPES AND LOOK AT THAT MERMAN!!!

FRECKLES!!!

Y'all, I’m just…so so happy.

I’m 35 years old and I’ve never seen a Barbie that looked like me, and then there I am as a Barbie in a purple sweater with thick thighs and evenly proportioned boobs and pink hair and a cat.

I can only imagine how other girls must feel.

Guys… Even being confident there would be even MORE added to the barbie range of dolls…. I was not prepared.

I am about to image spam you so forgive but there’s just SO MUCH

holy shit. I’m like… not even a doll person and so many of these I want!

There’s LITERALLY too many to add

(who is she?)

Plus sized Barbie with DIMPLES

They actually have a barbie with albinism and bothered to give her a proper face-sculpt!

This one looks like she could kill me instantly if she made direct eye-contact

This one’s smile is just KILLING me

Nubian girl because we’re not messing around

Also… this doll does not have any name on the product listing nor on the packaging so this might just be me but…. help me out here guys… is this.. ….is this a non-binary barbie? Am I presuming too much or is that what I’m looking at here??

Also final note. Just to REALLY drill this all home, Barbie has some photos of kids playing with the dolls and

Ironically, Barbie did not come to play around.

Also I’m obsessed with this Sally Ride doll

i babysat the sweetest little girl who was in a hot pink wheelchair. it was almost brand new, and she was just so excited to finally have a good wheelchair!! the day i walked into the house after she’d gotten it, she wheeled over to me with the biggest smile and said “it doesn’t hurt my back anymore!!”

for her birthday, i got her a barbie doll who looked a lot like her (it was the one with vitiligo) and a little barbie wheelchair and a few other accessories because who doesn’t like accessories?

apparently she’d had a white doll for a while and of course loved her doll but when she saw not only the one with vitiligo but also the wheelchair? and she put that little doll into the wheelchair and pushed her around a bit on the table? she looked up at me and burst into tears, grinning from ear to ear, and murmured to me “she’s like me. i didn’t know there were ones like me” and lemme tell you i nearly broke down right then and there and i gave her the warmest smile and hug i could muster up and her parents called me a few months later (i’d stopped babysitting because they didn’t have money to pay and wouldn’t allow me to babysit for little/free like i offered because i knew they both were searching for jobs and couldn’t be around their kid much bc interviews) and they just thanked me, their daughter was “so happy to have a doll like her that she carried the barbie around with her all the time”. they hadn’t been able to afford the doll and were actually saving up for a wheelchair at least.

this isn’t overkill.

Trevor Noah interviewing Judith “Badass” Heumann

[ID: collection of tweets from Amanda Hackwith @ajhackwith reading

“If you’re fuzzy on why changes to the ADA is such a big deal, I get it. I’m keenly aware of what being abled blinds you to. I’m here to introduce you to the thing that dominates my husband and I’s life: Logistics. Hey. Abled friends. This thread is for you. #HR620

Disclaimer: I am not physically disabled. My husband is. He has used a wheelchair since birth. I’m using ‘we’ in here because that’s how we’ve experienced it, and this is shared with his permission. OK? Ok.

The reality of living with a disability is Logistics. We don’t just do something. You figure out if we CAN do something. And then try to chase down the secret hidden puzzle of how WE do it. Because, I guarantee you, we are the exception.  We are always the Exception.

So: join us. We leave home. We don’t call for an accessible taxi because that will take an hour. We can’t take a zipcar because there’s no hand controls. Walking through the door is Logistics.

We take a bus, praying that no one else with a wheelchair, walker, baby carriage, grocery bag, or big-ass backpack has already taken up the two accessible spots on the entire bus. Two. If so, we’re out of luck.

Or we take a hip, tech-will-set-us-free rideshare. There is no accessible option in the app. We pray that the ride that comes won’t drive off when they see a chair. That the folding chair will fit.

Maybe we walk home. We fought city hall for neighborhood curb cuts last year! Only fancy condo construction has torn them out again. For months. So we walk in the gutter of a busy industrial street.

We see a show. We can’t buy tickets online. We have to call to see if one of the five accessible seats in the theatre is available. There’s only one ‘companion’ seat. We aren’t expected to have friends.

We book a hotel. We have to investigate how crappy the accessible room is. (It’s usually a less desirable retrofitted room.) How a ‘normal’ room is laid out. If we can ‘get away’ with being treated as normal. For once.

We fly. We introduce ourselves to the attendants. We PROMISE we won’t be a bother. That we won’t need assistance. That we won’t need to rely on the rickety chair they want to strap him to, Hannibal-style. We make the attendants nervous.

We fly. We successfully board, but the bathroom is twenty feet to the back of the plane. We don’t have our chair. We hope we don’t need to pee for the next nine hours.

We want to do a fun tour of a new city/country/landmark. We spend hours calling tour companies, emphasizing how low fuss we are, how independent we are, how we’re one of the ‘cool’ disableds, if only they have room to fold his chair with the luggage. We promise to be good.

We want to eat at a special restaurant. It’s in a historical building. We crawl on our knees and throw the chair up the stairs to eat there anyway. There are stairs and there are stares. We are everyone’s free entertainment.

We eat at a restaurant. It’s accessible, sure! Just call ahead and Jimbob will throw a board across the steps for you to roll up. Or there’s an accessible entrance! It’s the loading ramp, out back. Through the pee-soaked alley and trash cans. Can’t miss it.

We eat it a restaurant. It’s totally accessible! Except for the bathroom upstairs. You can hold it until we get home, right honey?

Work has a social event. It’s held at one of the above ‘trendy’ restaurants. But HR totally apologizes, okay? Be cool. We can be cool.

We want to go home. We become invisible to taxis. He hangs back until I flag one down and glare the driver into submission.

W apartment hunt. All the cute ground floor dog-friendly units are lofts with stairs. All the accessible units have been rented out to able-bodied people because ‘no one wants them’.

We apartment hunt. The ‘large’ bedroom doesn’t leave enough room to either side of the bed for a wheelchair to sit. The glitzy new apartments have bathroom doors too small to get through.

We apartment hunt. The building is totally accessible! Except for that one tiny step. In the common room. To all the amenities you’re paying for.

And this is important: We are white, educated, financially secure, fairly young and healthy aside from the wheelchair. In other words: BEST CASE SCENARIO. We literally are operating and interacting with the ADA on every privilege we can manage.

If you’re surprised by what I’ve said, keep in mind the majority of the disabled community has it so much worse. With so much less resources. Even WITH the existing ADA. #HR620

No imagine how much worse, more hostile, the world will be if every target of discrimination had to ask each business, in writing, one at a time, to please not break the law. And they have 90 days to ignore them. And another 180 after that. Every restaurant. Every store. #HR620

Imagine you had to beg every business to allow you to exist. Imagine people complaining about ‘nuisance lawsuits’ and ‘support peacocks’ to you. Your existence is a nuisance. Your existence is over legislated. Your existence is unnecessary. Now call your damn senators. #HR620 “

Want your character to have a cool prosthetic in the modern day?

steampunk? check

#aesthetic? Floral?

avant garde?

cyberpunk?

It’s here !! The guide for two-legged people who don’t know how to draw wheelchairs !!! 7 pages of infodump ! Disclaimer : I don’t know everything, I have one (1) experience of wheelchair user who used both bad and good chairs, and I share what I learned.

Image description :

1) Calvin in his wheelchair saying “yo” under a huge title “how to draw manual wheelchairs properly by Calvin Arium, a wheelchair user comic artist”.

2) A character says “my character self propels in a chair that was outdated in 1970 lol” Calvin says “so it looks like you two legged people don’t know the difference between an hospital chair and a chair made to be independant” an arrow point the crapppy chair, saying “we never want to see this again”

a bubble says “the hospital chair is extremely unpractical, tough considering it’s cheaper than a good custom chair a lot of us have only this”

3) a character hurt himself trying to reach the wheels of the hospital chair. Several arrows point why the chair is unpractical : “high backrest restrain shoulders movement” “huge armrest restrains wheel access” “separated footrest : amovible, cheap, bulky” “x structure, foldable but heavy” “huge front casters for stability” “heavy wheels”

4) Several arrows point an active wheelchair (the KSL by Küshall) : “usually no armrest” “a low backrest allow more movement” “light, design, ferning expersive” “special cushion to avoind injuries” “knee angle is usually 90°” “one single piece of frame, sometimes entirely welded” “weight : from 4 to 10kg” “often rigid” “center of the wheel is the center of gravity” “higher quality wheels : less spikes”

5) A hand grab different parts of the wheel, pushing harder in the second half. Bubbles says “some have gloves, some don’t. The hand must grab the biggest area possible. Less movement = more energy. This is a common but not only way to push.Calvin is on his back wheels, rolling on grass and dirt bubble says “popping a wheelie is when a wheelchair user rolls on their back wheels to roll on every complicated surface.

6) several drawings illustrate the folding frame, the ergonomic but rigid and expensive backrest, the separated footrest (only for folding frame), the handles, the folding handles, athe amovibles handles, or no handles, the cool fancy loopwheels, the pretty custom colors